To be angry at a possible diagnosis reversal?

[WashedUpCelebrity]

Kind of outing, so NC for this.

Basically, I've been seeing a rheumatologist in another town since may. X-ray and MRI scan apparently confirmed arthritis of the inflammatory kind - okay, something to deal with. I moved back home and had to move from my rheumy to a new one in my hometown and he was quite attentive, but gave me a diagnosis of Fibromyalgia and alleged inflammatory arthritis and sent me for more x-rays and blood tests (a waste of NHS money and time, surely?). I get that he would want to be thorough and I appreciate that but I've been diagnosed by a competent hospital and a competent GP who wouldn't easily diagnose arthritis in a 20-something and now it's possibly being reversed? I don't disagree with the fibro diagnosis but I found it really dismissive to act as though I was lying about having arthritis when I got a referral and it's obviously on my GP notes, so why not my hospital ones?

I'm concerned it won't show up enough on x-rays because we caught it early for him to reliably diagnose me. I need this for my ESA because I can't work due to the extreme pain I'm in and if that's withdrawn, I don't know what I'll do. Just crawl into a corner and die I guess?

I scored 0 on the arthritis examination because I'm currently on DMARD medication (immunosuppressant) to stop it!

Okay so just to check.....were you diagnosed by a GP and now a rheumatologist at a different hospital has said fibromyalgia and maybe arthritis? Rheumatoid arthritis can be difficult to diagnose definitively so I'm not surprised that the other consultant is ordering further tests especially if they've not already been done (but surprised if previous doctor diagnosed without blood test?).

It's not unusual for diagnosis to change when more investigations are done

Also.....if you've moved trusts then the hospital won't have access to your old notes, they will have what your GP sends in a referral

No, I was diagnosed by a GP, sent to a rheumatologist to confirm and she confirmed it was inflammatory arthritis and started me on treatment. I then moved and got set up with a second rheumatologist.

So they had already done x-rays AND an MRI scan to confirm bone erosion in my joints.

If you have confirmed bone erosion I wonder why they would doubt the RA diagnosis.

Why fibromyalgia when the pain would be explained by RA? RA isn't just "joint pain", it hurts everywhere sometimes.

That's what's getting me. I offered to retrieve my notes myself from the old hospital and he refused - I'm getting them anyway just in case so I can have something if they try to remove the diagnosis. If they've diagnosed it, it's there, right? I can't imagine they'd put somebody my age on the medication I was on for zero reason or a guess at a diagnosis. I'm 23.

She also gave me a (horrible) steroid shot in my knee and took out a crapton of gunk from it.

I also got a diagnosis of inflammatory arthritis in my twenties. They went back and forth on the specific type a few times and eventually settled on RA. I don't have typical blood results either, only one kind of antibody. Once they told me they weren't 100% sure is RA because I only have one erosion but they've never told me I don't have inflammatory arthritis.